Feeling Broken?

NOTE: This post may be fun and informative BUT it may also offend some. If you are sensitive about very grown-up subjects, please avoid this post.

Many female FM sufferers have reported also suffering from Vaginismus. Vaginismus is defined as involuntary spasm/contraction/reflex of the muscles surrounding the entrance to the vagina, making penetration impossible and/or painful, which causes personal and/or relationship distress.

It is a very serious subject (so, please note, I am not making fun of the condition); however, I found this cartoon which deals with the subject a little more lightly.

2016-01-05-Vaginismus

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How are You?

Hello. How are you?

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No…really.

I’m asking. I don’t want to hear that you’re ‘fine’ because you’re being polite; because you think I don’t care; because you’re used to most people not caring. So…how are you? You can actually tell me in the comments below because I’m going to tell you how I’m feeling…

I am so sad (yes, I’m depressed and I constantly get angry comments here for referring to it as sadness…but that’s what it is to me – it’s a deep, deep pool of sadness that I cannot swim out from). It seems that, suddenly, the people who I have chosen to surround myself with, no longer care how (or even, if) I answer the ‘How are You?’ question.

And, the worst part is that they don’t have to ask. They all know me well enough to see that there is something very wrong…they are just choosing not to delve further.

My sadness comes from asking myself why – they’re sick of hearing about my woes? they want to have a life beyond the lounge-room? they no longer believe in my worth? they no longer care?

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Lifestyle Management With a Chronic Illness

by Harper Spero for HEALTH PERCH (with parenthesis by me!)

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During the first ten years of my life, my mom was on a mission to figure out why I had chronic ear infections, eczema, abscesses, and ongoing dental issues. Finally, when I was 11, I was diagnosed with Hyper-IgE, a chronic illness.

The National Institute of Health defines a chronic illness as a long-term health condition that does not have a cure. Some examples of chronic illnesses are epilepsy, heart disease, diabetes, asthma, cancer, HIV, Alzheimer’s disease and dementia, multiple sclerosis, Parkinson’s disease, cystic fibrosis, Crohn’s disease, and arthritis (and Fibromyalgia, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and other related illnesses).

While most of these chronic diseases are familiar, there are hundreds of lesser-known diseases, including Hyper-IgE (and Fibromyalgia, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and other related illnesses).

Hyper-IgE syndromes (HIES) are rare, primary immune deficiencies characterized by elevated serum IgE, dermatitis, and recurrent skin and lung infections. When I received the diagnosis, I had no idea what that meant or what to make of it. (Sound familiar?) I now had something to hang my hat on—but what exactly was it?

I was on medications here and there, dealt with many bumps along the way, and changed my diet numerous times, but never actually took complete control of my health. I chose to treat the symptoms as they arose instead of treating the illness as a whole. When I was 27, a cyst the size of a golf ball was discovered in my right lung. Shortly after having surgery to remove a quarter of my lung, I realized I needed to take complete control of my health. I didn’t want to be defined by my illness, but I also knew I couldn’t hide anymore. I knew I needed to evaluate my health and wellbeing and figure out what lifestyle changes I could make.

So I took a time out. I evaluated all facets of my life including environment, work, social life, diet, exercise, and even the way I processed information. This evaluation brought me to these 10 steps that can apply to managing most chronic illnesses. All of these points have helped to vastly improve my outlook and to move me in the right direction towards a healthier, well-balanced, satisfying life.

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  1. Find a team of experts

When you receive a diagnosis from a test result, a medical exam or a conversation with a doctor, it’s important to determine the best people to add to your health and wellness team. A key person should be one doctor that specializes in your specific chronic illness and with whom you feel comfortable, confident, and safe.

Another key component is finding specialists who may be able to support you with the different aspects of managing life with the chronic illness. This can be a team including (but not limited to) a nutritionist, acupuncturist, massage therapist, health coach, or physical therapist.

  1. Empower yourself

Your doctor can provide a ton of information that will allow you to educate yourself. This is the time to take ownership of this newfound challenge you’re facing. It’s not always easy, but you have control over the way you manage your life and can educate yourself with the resources available.

Be wary when reading articles about your chronic illness. It’s easy to assume one bad thing that happened to a single person could happen to you. Living your life in a constant state of fear won’t allow you to enjoy the life you were given.

  1. Create or join a supportive community

When facing a new diagnosis, it’s often a struggle to determine who to talk to and who to relate to. Find or create a like-minded group of people (as small or big as you’d like) that are experiencing similar circumstances. It may be beneficial to bounce ideas off of one another to avoid feeling alone. There are hundreds of Facebook pages for chronic illnesses, message boards, and online platforms for support. Additionally, there are meet-ups and other groups that get together regularly to discuss chronic illnesses. These add a personal, face-to-face element of support for those who are going through similar situations.

  1. Start a dialogue with your loved ones

Family and friends are there to support and love you unconditionally. It’s important to find the words to tell them what’s going on with you, but also to help them help you. Everyone reacts to these types of life situations differently—some take it much harder than others. Some people are quick to jump to conclusions and determine how they think you should manage your illness. One of the best resources for those with a chronic illness and for their family is a How to Be a Friend to a Friend Who’s Sick by Letty Cottin Pogrebin. While the book provides amazing tips for dealing with cancer specifically, it’s also relevant to all chronic illnesses.

Surround yourself with people who inspire, motivate, and support. You have the ability to choose who you want in the movie of your life—those who play a leading role, others who are extras, and the final group that doesn’t make the cut. Remove toxic relationships. They can serve as an added burden when managing life with a chronic illness.

  1. Don’t let your illness define you

64. More to meIt’s really easy to get consumed by doctor’s appointments and the overall maintenance of managing a chronic illness. It’s also extremely important that your illness does not define you or your life. You should always have the ability to allow fun, pleasure, and happiness into your world. In Danea Horn’s book Chronic Resilience, she states, “If you ‘own’ your illness, that probably means it has become your identity … you give a level of importance to the disease—one it does not deserve.” Remind yourself what is important to you and what you enjoy doing most. Be sure to implement those things into your daily routine.

  1. Be conscious of your diet

(Okay, this is where I really, REALLY suck!) Evaluate the foods that you eat. Do they benefit your health or do they drain you? Amie Valpone, founder of TheHealthyApple.com says, “Eating for wellness is a huge topic these days. Food sensitivities are increasing and people are understanding certain healthy foods (such as lemon, cilantro, etc.) are causing inflammation in their bodies along with the major toxic triggers such as gluten, dairy, soy, and sugar.” Valpone suggests sticking with one-ingredient organic foods such as raw nuts and seeds, beans, and organic animal products.

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  1. Keep fitness top of mind

95. yogaThis doesn’t mean you need to be at the gym every single day, but it does mean every bit of physical activity can help. Staying active helps the body function better and can quiet the mind. Fitness can include walking, running, spinning, rowing, yoga, weights, swimming, and more. Everyone has his or her preferred method of physical activity. Try out different gyms, studios, machines, classes, or teachers to determine what’s the right fit for you. Just because one person loves yoga doesn’t mean everyone else does. There are plenty of podcasts, apps, and online video platforms that provide exercises you can do in the comfort of your home or office.

  1. Give yourself a break

Managing life with a chronic illness can be exhausting. Keeping track of medications, doctor’s visits, and ongoing symptoms is nothing short of daunting. “We beat ourselves up for the way our body is letting us down,” Horn says. It’s important to cut yourself some slack and understand what you’re going through isn’t meant to be easy and there will be forks in the road. Sometimes your body isn’t going to function the way you’d ideally like it to and it’s imperative to be mindful and accepting of that. Your mind and body will benefit.

  1. Stay organized

With bills, prescriptions, doctor’s appointments, vitamins, and more to keep track of, staying organized is vital when managing your chronic illness. Find the best way to stay on top of your calendar. Google Calendar or an old-fashioned calendar/datebook can be helpful to keep track of when you start a medication, doctor’s visits, and symptoms.

  1. Give back

Sometimes it’s hard to imagine, but there are people in worse shape than you. Another person’s chronic illness may be getting the worst of them, they may be struggling financially, or they don’t have any online or offline support. These are likely the people who may not reach out for help but would appreciate any bit of support you can provide. Whether it’s virtual or in person, any way you can give back to those facing a chronic illness will not only be appreciated by the recipient but also extremely rewarding for you.

There is no question that living with a chronic illness can be challenging. Take ownership of the aspects of your life that you do have control of and you may reap the benefits of this empowerment.

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Making Awareness Day Personal

For 2012, 2013 and 2014, I went BIG for Fibromyalgia Awareness Day. This year, I’ll admit to dropping the ball. I’m tired, physically and emotionally. I’m tired of fighting the world. So this year, I’ve been fighting for me!

I’m sorry if you feel like I have let you down and not been there to support you.

I made this video (quite a while ago) because I am lucky enough to have a Mommy who loves me and tries to understand. (I’m not so sure about the rest of the family.) But, because of this, it upset me so much when I hear from so many of you that you don’t have the support and understanding you need. Friends and family are supposed to be there for whenever you need them. Most days, I get a message or comment from some-one who is lacking support from their nearest and dearest. Sometimes, it’s because you hide your pain, or you haven’t asked for help. Sometimes it’s because they just don’t get it. 

I’m hoping that presenting these people with this video might help.

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Operation Affirmation – Day 27

Affirmations are a way for us to harness the mind’s power by directing your intentions toward our best selves and our happiest lives.

Say this phrase (another one of my favourites!) to yourself all day long. Write it down, email it to yourself, and post it where you will see it all day.

Love your day, love yourself, love your life!

Like this affirmation?
Get it on something you will see every day!

What’s the Deal with Fibromyalgia?

This piece has been re-blogged from ProHealth and authored by Sue Ingebretson (www.RebuildingWellness.com).

Have you ever been asked, “So, what’s the deal with fibromyalgia? What is fibro, really?”

When you’re asked, what do you say? Do you have a clear, concise spiel that gives the facts or a printed list with need-to-know bullet points?

Nope, I don’t either.

Sometimes when I’m asked, I’m in the middle of doing something else. It takes me a moment to switch gears into educator mode. Other times, I feel that the person asking the question doesn’t really want to know facts and figures. There’s more going on than what meets the eye.

Our answers about our personal health challenges really depend on who is asking. And, our answers change based on how they ask.

So, I have a suggestion for you.

Print out the following letter. Keep copies handy for the next time you’re asked questions about fibromyalgia in general, or even about your personal health challenges. This letter covers all the bases, yet gets some very important – and personal – points across in a non-technical and relatable way.

I hope you find it useful, and if so – please share!

You can download a printable copy of the letter HERE.

Fibromyalgia?  Because you asked…

Dear Concerned,

You’ve recently asked me about fibromyalgia and I’m sure you’re wondering what all the hype is about. While most people have heard of it by now, that doesn’t mean they know what it is. There’s a lot of conflicting information out there and it can be confusing.

After all, if everything you know about fibromyalgia comes from what you see on TV, you might believe I should be out rowing a canoe, gardening, or opening my own bakery and sweets shop. But, instead, you see me not feeling well and not participating in activities that are too taxing or stressful.

To clarify my response, I’m providing it in this written format. It’s my way of making sure I don’t leave out anything important.

Here’s what you need to know…

Health conditions in general, are classified as either diseases or syndromes. Diseases have a specific, definable, biological cause and have a specific set of symptoms. Health conditions that have no definable biological cause and exhibit a variety of symptoms are categorized as syndromes.

Fibromyalgia, therefore, is categorized as a syndrome as are multiple sclerosis, rheumatoid arthritis, migraines, and hundreds of other chronic health challenges. Fibromyalgia likely affects about 10 million Americans (mostly women) and the numbers globally continue to rise.

Now that I’ve covered some fundamentals, here are five more things that I think are important for you to know about fibromyalgia as well as about how fibromyalgia affects me.

#1 – Fibromyalgia is actually a systemic health concern. That means multiple systems of the body are compromised and may experience dysfunction. Many of us exhibit symptoms related to the musculoskeletal, nervous, respiratory, digestive, cardiovascular, immune, urinary, endocrine systems and more.

We’re all different. Some fibrofolk experience symptoms that relate to more than one system (or systems) than others. For example, some may experience frequent digestive dysfunction issues and rarely experience cardiovascular issues, etc. This varies widely.

The most dominant symptoms that we do share, however, are:

  1. Chronic widespread body pain that varies in type and intensity day by day (muscles, joints, headaches/migraines, etc.)
  2. Fatigue (this doesn’t mean simply tired – it means knocked down, dragged out, run-over-by-a-truck exhausted feeling that lasts for days, weeks, or much longer)
  3. Sleep disturbances (difficulties in falling asleep or staying asleep – also, not feeling rested even after sleep)
  4. Concentration, memory, and cognitive dysfunction issues (grasping for words, forgetfulness, difficulty in completing tasks, etc.). This is oftentimes referred to as fibrofog.

There’s a plethora of other symptoms, too. Digestive issues are very common as are anxiety and mood issues, balance and coordination challenges, weight management issues, whole body stiffness, PMS, inability to regulate body temperature and more.

While there are far too many symptoms to list here, the top four listed above are the biggies. Mine vary from day-to-day and while sometimes I feel some more than others, they’re all usually lurking under the surface.

I’d like to say a quick word, here, about depression. As you can imagine, dealing with chronic and relentless pain (and more) leaves its mark. It can leave a person feeling frustrated at best and potentially depressed at worst. Depression can especially develop for those who feel overwhelmed, unsupported, and hopeless about their health circumstances.

Therefore (non-clinical) depression can result from all of the factors listed above. It’s not the cause of the factors listed above. This distinction matters for reasons of establishing a diagnosis, a future prognosis, and potential treatment(s) for existing depression.

#2 – No, I didn’t “do” anything to cause fibromyalgia. There are multiple reasons that fibromyalgia can develop and it’s never just one thing. It takes a combination of factors and some of the most likely include:

  • A compromised digestive system* (contributed to by food sensitivities, stress, processed foods, diets and more),
  • A family history of immune system dysfunction and/or allergies.
  • Infection(s).
  • A traumatic physical event or injury (includes surgeries).
  • A traumatic stressful/emotional event.
  • Vitamin/nutrient deficiencies (*can be contributed to by a compromised digestive system).
  • Environmental exposures to toxins (both internal and external).
  • Multiple chronic infections leading to repeated use of antibiotics, steroids, or corticosteroids or non-steroidal anti-inflammatory medications.
  • Dental issues.

Also, any number of the above factors can lead to:

  • Whole body inflammation.
  • Chronic yeast and candida issues.
  • Compromised adrenal, thyroid, and hormone regulation.

These things set the stage for dysfunctions in multiple systems of the body. That’s why there’s such a wide variety of symptoms.

#3 – It’s important to understand that fibromyalgia and my symptoms are unpredictable. I’d love to “know” how I’ll feel tomorrow or even next week, but I simply don’t. Sometimes I can do something relatively minor (like fixing dinner for my family) and feel awful afterward. Other times, I can participate in something major and feel fine.

But, here’s the important part. If I can’t predict my own reactions to foods, places, events, circumstances, etc. – I certainly don’t expect you to.

I appreciate your concern when you ask if I “should” do this or that, but it’s my choice. I get to decide what I will or won’t choose to do. And, I’ll deal with the consequences of my choices. Additionally, I don’t expect you to know what to do, what to say, or even how to help me. It’s my choice and responsibility when (or if) to ask for help, and to share how I’d like to be helped.

#4 – In a nutshell, it’s important to grasp that having fibromyalgia makes me hyper-sensitive. Things that don’t pinch, hurt, or even annoy most people might drive me crazy. A heavy necklace or a large purse can feel like I’ve got an anvil pulling on my neck and shoulders. A simple touch or even an embrace can leave me feeling as if I’d been squeezed in a vice.

Sounds, lights, smells, tastes, and touches can be unusually amplified. Please respect (and withhold judgment) when I express that something may be too loud, too bright, to stinky, too spicy, or too painful.

I’m not trying to be difficult.

I’m simply trying to share my feelings and experiences.

And, along with being hyper-sensitive, there are some things I can’t control. While I agree it may look funny, it’s not humorous to me when I startle easily, jump at loud noises, or shriek when unexpectedly alarmed. It’s as simple as a reflex and I can’t change that.

It’s important to note that due to this hyper-aware state, stress is also amplified. Therefore, avoiding stress and dealing with the stress I can’t avoid has become my priority. For me, stress isn’t a simple fact of life to accept. Its negative effects are far-reaching and potentially long-lasting.

It is, therefore, an important health mission for me to participate in relaxation activities and care for my body physically, emotionally, and spiritually.

#5 – I appreciate your thoughtful suggestions for how to manage my health challenges, but keep in mind that above all, I’m doing the best I can.

Your helpful advice will be taken into consideration. If I apply your suggestion to my current protocol of treatments, I’ll do it because I feel it could benefit my healing process. If I don’t take your suggestion, it might be for any number of reasons. I may have already tried it, I may have researched or read something to the contrary, I may not have the resources to put it into practice, or I may feel it would conflict with something else I’m already doing.

While I may or may not have the time or energy to go into all this detail with you, please know that I value your concern. If there’s anything that I’ve learned, I know that there’s no single pill, practice, or program that will “fix” fibromyalgia. If there were, I’d already be taking it, doing it, or be devoted to learning it.

Which is exactly what I’m doing now.

I’m learning as I go.

One of the hardest lessons I’ve had to learn is how to express myself. Although it’s difficult, here are a few thoughts on that topic:

Please don’t….

  • Tell me that you know how I feel. Even if you have fibromyalgia and/or any other health challenge, we’re all different and experience our conditions differently.
  • Tell me how I should feel. That’s up to me.
  • Tell me that so-and-so drank this “magic juice” and got better. There are as many treatments that don’t work as ones that do. I’m on the journey to discover this process on my own.
  • Compare me to siblings, friends, colleagues, who don’t have health challenges or even those who do. As I’ve stated, I’m on my own path to wellness.

Please do….

  • Tell me that you’re thinking of me. Even if I’m not terribly responsive or talkative it’s wonderful to know that you’re supportive of me and of my health.
  • Send me books, magazines, cards, emails, notes, etc. that express that you’re there. Chronic illness can be SO isolating and every kind word from you matters to me.
  • Ask if there’s anything specific that I need. Even if I say “no” 50 times out of 51, that one time that I really need something may mean the world to me.
  • Continue to search for helpful treatments, protocols, nutrients, supplements, and practices. Just because I don’t always implement your suggestions doesn’t mean I don’t appreciate the help. I’m always open to and encouraged by current news and information.

In summary:

  • Remember that my body may bruise like a tender peach, but my will is strong as iron.
  • What I’m really trying to say is that inside, I’m still the same me.
  • I’m just trying to find my way as best I can.
  • I’d love it if you’d come along with me on this unpredictable journey.

               Not behind me pushing,

               Not in front of me pulling,

               But beside me – guiding, encouraging, nurturing and supporting

Are you with me?

_________________________

Sue-IngebretsonSue Ingebretson (www.RebuildingWellness.com) is an author, speaker, certified holistic health care practitioner and the director of program development for the Fibromyalgia and Chronic Pain Center at California State University, Fullerton. She is also a Patient Advocate/Fibromyalgia Expert for the Alliance Health website and a Fibromyalgia writer for the ProHealth website community.

Her #1 Amazon best-selling chronic illness book, FibroWHYalgia, details her own journey from chronic illness to chronic wellness. She is also the creator of the FibroFrog™– a therapeutic stress-relieving tool which provides powerful healing benefits with fun and whimsy.

Would you like to find out more about the effects of STRESS on your body? Download Sue’s free Is Stress Making You Sick? guide and discover your own Stress Profile by taking the surveys provided in this detailed 23-page report.

It’s March (almost)

Suffering with a chronic condition can be extremely frustrating, making you feel lonely and misunderstood.
Developing and nurturing a support system can make some of these horrible ‘side effects’ just that little bit better.

BUT do you know the best places to locate these oh-so-valuable resources? That’s what the latest issue of LIVING WELL with FIBROMYALGIA is about… and it will be out and in your InBoxes tomorrow.

Have you subscribed? It’s free, fun and might actually help you.

Subscribe now by clicking here.

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Pay It Forward

payFor Christmas (and any other time of the year), how about we all try to do, at least, one nice thing for another person?

Remember the movie, Pay it Forward (my favourite movie of all time!)?

Wouldn’t it be great if the world was a nicer place?

FCK

This piece is from Jess at Discovering Me, a member of FCK: a directory of blogs that help spread knowledge and awareness of Fibromyalgia.

This is INITIATIVE!!! 

In its simplest form it is thinking of and planning something, you can do in the form of a physical job or task and following this through to completion.

I’m not talking about grand plans that need grand rewards. There should never need to be any kind of self boost from helping someone. This isn’t something you do and then plaster all over Facebook to your friends, or blog about.

Simple examples of Initiative:

For the husband

  1. Husband sitting watching favourite T.V. show can just sit there OR he could use some initiative and fold the washing that Wife has washed/pegged/unpegged/brought in off line/left in basket hoping said Husband may tonight have found a spare can of initiative in refrigerator not another beer can.
  2. Husband has told Wife it is her night off dinner duties. Husband has no idea how to cook so you could either ask wife how to do everything – starting with what shall we have for dinner… OR you could use some initiative either plan a meal from a recipe book, online, call your Mum/sister/Mother-in-Law/best friend. But do not tell Wife she has night off and then have Wife wishing she had just bloody well done it herself as it was easier. All else failing order takeout.
  3. Wife gets told its her day to have a sleep in. Husband can tell she is tired. Husband can tell children to quietly watch tv and get their own breakfast while he stays in bed too on his computer/phone/tablet OR he could use some initiative and take the children to a special breakfast outing somewhere followed by a morning out with Daddy {while Mummy rests in peace and quiet}
  4. Husband offers suggests Wife has an early night as things are getting on top of her lately. Muchly appreciating the offer exhausted Wife goes to bed, then Husband sits and watches T.V  OR you could use some initiative and do the dishes, pick up the dirty washing, fold and put away the clean washing etc etc. There is nothing worse than going to bed for an early night to get up the next morning and find that nothing got done and you are a day behind on chores.

For the new parent 

  1. Make a few home cooked meals/baking {that are suitable for freezing} and drop them off in the first few days/weeks after the birth of their new bundle. This is the mother load initiative. Dinner time is called the witching hour in households with children for a reason. Make sure they are in containers that can stack neatly in the freezer and can be reheated {the supermarket and dollar stores have these}. Write on the containers whats in them – it saves trying to guess what tasty treats you may be getting and find tonight we are eating lammingtons!
    A really organised friend may even be able to get a few friends on the go with this to have a roster system going where hot meals are being delivered at tea time. I prefer the reheat option to gives you the control over what time you eat and if you are having a super organised day and managed to do dinner yourself you still have back ups in the freezer. If you are going to go with a roster of freezables make sure the organiser has spied out the available freezer space – usually the Dads are the go to option for this they never say no to food where the Mums may feel bad or that they aren’t doing enough as a mother blah blah. This is help/gift/initiative not judgement
  2. When dropping off presents – unless you have arranged a time or can see/hear movement – don’t go knocking and expecting to be let in. Leave the present on the doorstep with a lovely note/card and arrange a time that is suitable with the new parents to stop by again. Ahem I hear initiative.
  3. Finally getting to see the baby – when you arrive baby is asleep and Mum looks exhausted. Hello initiativeeither let you friend know you are happy she/he/they are still alive and shoo them off to bed while you leave them to rest and you will catch up soon. OR offer if there is anything you can do – hang out some washing, put a load on, fold some, some ironing, take an older child with you some they can rest, do some dishes, vacuum. Just use some bloody initiative.
  4. If by chance you actually make it in the door for a visit and everyone is alive, well and rested initiativedoes not go out the window. This is where YOU get up and make the cuppa and while you are there you also might do some washing up or stack the dishwasher. You may also realise the fridge is almost bare due to new baby and no time to shop – so make a mental note to either do a small online shop and have it delivered or go to the grocery store,  fill a box and drop it off of some essentials, easy snacks and a few treats for Mum (milk, bread, butter/marg, yoghurts, fruit, cold meats, nuts, some chocolate, snack bars etc etc).
  5. Don’t stay too long Babies get tired, Mums/Dads are exhausted. Unless you are Mother/Father/Brother/Sister/ Aunt/Uncle and you are staying at the house to HELP (not be a pain in the ass and be waited upon by your already exhausted children/siblings). Use initiative and know when its time to go – or when you need to stay longer. Ask if you should leave and know when they are being too polite to tell you to feck off already!
  6. DONT give advice unless it is asked for. Use some freaken’ initiative babies are all different and so are the parents. What works for you doesn’t work for everyone. Be there to listen and if you are asked for advice give it but always add this is what worked for me. That way they don’t feel like they left some manual behind that everyone else got or feel judged that you could do it when they so clearly are having a tough time. Tell them about a struggle you had to let them see we all fail at this and somehow it all turns out okay (ish).
In public 
  1. Old lady with shopping walking towards door struggling with bags OR you could practice some initiativeand hold open the door, offer to carry a bag and help her to her car. Even better! get the kids to help! {Teach your kids initiative now people before it’s too late}
  2. At the park little boy on trying to get on swing. Mum juggling newborn saying I will feed you once Johnny has his swing. You could think poor child, welcome to the real world, you are going to be ignored a lot more than just this now! OR you could say to the Mum is it ok if I help him up and give him a push? I remember whats it’s like to have my hands full! Use some initiative Mother will be grateful son got swing he has harped on about for past two weeks and she is able to feed baby who is no longer wailing like a fire truck.
  3. You see a mobile phone sitting outside the grocery store – clearly forgotten – no one in sight. You could think. Poor buggers probably wont be there by the time they come back OR you could hand it in at the grocery store service desk using your friend Mr. initiative.
  4. You are at your favourite family restaurant – The Golden Arches. After you have enjoyed your meal knowing the children will be eternally grateful {until the next time you have a fight which will be in approximately 1.5 minutes when you tell them you are not playing on the playground} you look around a see all the tables lined with trays and rubbish. You could get up and walk away thinking the lobby girl is going to have fun once she gets out here OR you could use some of that awesome initiative to go and put your trash in the bin and the tray on top. How hard was that? Would you expect your children to leave your table looking like that? So why is it okay just because you are out??

Initiative works best when you also have common sense and know your Husband/ Wife/Parents/Children/ Family/Friends well. If you know they are lacking support but there is no way you can help due to time and space try take the load off by sending a gift in the mail to let them know you are thinking of them. You can even do most of it online these days where you don’t even have to go to the post office.

If it is a family member rally the family {there may be a group of close friends instead} to share the load and see what you can all do between you. Everyone has different talents and abilities and between a group of people there should be a few ideas to help out.

Just don’t do nothing! ACTIONS SPEAK LOUDER THAN WORDS. Words are great and touching when we need some uplifting but action it by putting them in a really nice card and posting it – to say hey! I thought of you enough to pick this card especially for you, and then said lovely things too.

I think the world could be a better place if we could all learn to use a little initiative.

Me, too – Thanks Jess!

How to Understand Someone With Chronic Pain

In hopeful anticipation of informing YOU, a person who wants to understand: these are some things that can help YOU to understand, and help, people who suffer from often debilitating, chronic pain:

Remember: chronic pain sufferers (CPS) have already attempted numerous alternative therapies and know what therapies have worked or not worked for them.

1. Remember that being sick does not mean that the sufferer is no longer a human being.

1A CPS may spend the majority of their day in considerable pain. If YOU visit or live with a CPS, the CPS may be unable to enjoy the things they used to enjoy. The CPS remains aware, and desires to do what they used to perform. The CPS feels as if they are stuck inside a body over which they have little or no control. They still want to enjoy work, family, friends and leisure activities; however, pain keeps that enjoyment out of reach.

2. Learn the code.

2A CPS will often speak differently from people free of constant pain. Do not assume the CPS is not experiencing pain when they say that they are fine. The CPS attempts to hide the pain due to lack of understanding in others. Accept that words may be inadequate to describe how the sufferer is feeling. Recall a time when YOU experienced pain, then multiply the intensity and attempt to imagine that pain present twenty-four hours a day, every day, without relief. It’s hard to find the words for that sort of pain.

3. Recognize the difference between “happiness” and “healthy”.

3Remember the last time YOU had the flu, YOU probably felt miserable. A CPS has experienced pain from 6 months to many years. Pain has caused them to adopt coping mechanisms that are not necessarily reflecting the real level of pain they feel.

Respect that the person who is in pain is trying their best. When the CPS says they are in pain – they are! They are merely coping; sounding happy and trying to look normal.

3aLook for signs of pain: grimacing, restlessness, irritability, mood swings, wringing of hands, moaning, sleep disturbance, teeth grinding, poor concentration, decreased activity, and perhaps even writing down suicidal thoughts or language.

4. Listen.

4The previous two steps made it clear that a CPS can speak in code or make light of their pain than is the reality. The next best thing that YOU can do is to listen to them properly, and to make it clear that YOU both want to hear what they have to say and that YOU really have heard it. Use YOUr listening skills to decode what they’re hiding or minimizing.

5. Understand and respect the CPS’s physical limitations.

Being able to stand up* for ten minutes doesn’t necessarily mean that the CPS can stand up for twenty minutes, or an hour, or give YOU a repeat performance whenever. Just because the person managed to stand up for thirty minutes yesterday doesn’t imply that they will be able to do the same today. With a lot of diseases, a person may exhibit obvious signs of immobility, such as paralysis, or total immobilization due to weakness, etc. With chronic pain however, it is confusing to both the sufferer and the onlooker, and their ability to cope with movement can be like a yo-yo. The sufferer may not know, from day-to-day, how they are going to feel when they wake up and each day has to be taken as it comes. In many cases, they don’t know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

* Insert “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on, to this step, as the curtailment on a sufferer’s ability to be responsive applies to everything that you’d expect a person in good health to be able to do. That’s what chronic pain does to its sufferers.

6. Leave your “pep talk” mode for your kids and your gym buddies.

6Realizing that chronic pain is variable, keep in mind that a pep talk can be aggravating and demoralizing for the CPS. As already noted, it’s quite possible (and for many, it’s common) that one day they’re able to walk to the park and back, while the next day they’ll have trouble getting to the next room. Therefore, it’s vital that YOU don’t fall into the trap of saying: “But you did it before!” or “Oh, come on, I know you can do this!” If YOU want them to do something, then ask if they can and respect their answer.

Get over the need to give platitudes about the value of exercising and fresh air. For a CPS, “getting out and doing things” does not make the pain vanish and can often exacerbate the problems. Bear in mind that YOU don’t know what they go through or how they suffer in their own private time. Telling them that they need to exercise, or do some things to “get their mind off of it”, may frustrate them to tears, and is not correct advice, especially if YOU’re not medically trained and haven’t got a clue. If they were capable of doing some things any or all of the time, they would.

Remember that CPS are constantly working with doctors and striving to improve and do the right things for their illness. Another statement that hurts is, “you just need to push yourself more, try harder”. Obviously, chronic pain can affect the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain; not to mention the recovery time, which can be intense. YOU can’t always read it on their face or in their body language. Also, chronic pain may cause secondary depression (wouldn’t YOU get depressed and down if YOU were hurting constantly for months or years?), but it is not created by depression.

7. Never use throwaway lines.

7Assuming YOU know best by making such statements as “Ah well, that’s life, you’ll just have to deal with it”, or “you’ll get over it eventually. Until then, you’ll just have to do your best”, or worst of all, “Well, you look well enough”, etc., are lines that might make YOU feel done and dusted with the topic but they are both a form of distancing yourself from the person and making the sufferer feel worse and out of hope. Psychologist Mark Grant suggests that YOU should throw lifelines rather than throwaway lines.

8. Check your own patience.

If YOU’re impatient and want them to “just get on with it”, YOU risk laying a guilt trip on the person who is suffering from pain and undermining their determination to cope. They probably have the will to comply with your requests to go out and about with them but have neither the strength nor the coping capacity as a result of the pain.

A CPS may need to cancel a previous commitment at the last-minute. If this happens, please do not take it personally. If YOU are able, please try to always remember how very lucky YOU are, to be physically able to do all of the things that YOU can do.

Be very understanding if the CPS says they have to sit down, lie down, stay in bed, or take these pills right now. It probably means that they have no choice but to do it right now, and it can’t be put off or forgotten just because they happen to be somewhere, or they’re right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

9. Be sensitive when suggesting medicines or alternative treatments.

9Prescription drugs, over-the-counter medicines and alternative therapies can have side effects and unintended consequences. Some may not appreciate suggestions, and it’s not because they don’t want to get well. They may have heard of it or tried it already or some may not be ready to cope with new treatment that can create an additional burden on their already over-burdened lives. Treatments that haven’t worked carry the emotional pain of failure, which in and of itself can make the person feel even lower.

On the other hand, never be afraid to ask them about how satisfied they are with their treatment. Mark Grant says that it is important to ask helpful questions about whether the chronic sufferer thinks their treatment is satisfactory or if they think their pain is bearable. He suggests that people rarely ask these open-ended “helpful questions” that would help the CPS to open up and really talk. Of course, if there were something that cured, or even helped people with a particular form of chronic pain, then they should be made aware of it. There is worldwide networking (both on and off the Internet) between people with chronic pain. Those can be good resources. Be sensitive in how YOU bring it up.

10. Don’t be put off if the CPS seems touchy.

If that’s the appearance, it’s probably because they are. It’s not how they try to be. As a matter of fact, they try very hard to be normal. Just try to understand. They have been going through a lot. Chronic pain is hard to understand unless YOU have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, they do their best to cope with this, and live their lives to the best of their ability. Just accept them as they are.

11. Be helpful.

11The CPS depends a great deal on people who are not sick to support them at home or visit them when they’re too sick to go out. Sometimes they need help with shopping, cooking, or cleaning. Others may need help with their kids. They may need help getting to the doctor, or to the store. YOU can be their link to the “normalcy” of life. YOU can help them keep in touch with the parts of life that they miss and desperately want to undertake again.

12. Balance your career responsibilities. If YOU are living with a CPS or supporting such a person on a regular basis, YOU need to maintain balance in your life. If YOU don’t take care of your own needs, health, and work-life balance, being around the CPS can bring YOU down even though YOU’re probably trying hard not to be. Avoid suffering from carer burn-out by getting other people to help, taking time out, and curtailing your guilt trips. Care for this person as much as YOU’re able but also care for YOURSELF.

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